Growing Up Without Knowing
Not rewriting my childhood. Finally understanding it.
I still find it strikingly difficult to comprehend the life I've lived. Not because it was extraordinary, but because looking back so much of it was inaccessible to me, as though I was present for it without ever understanding what was happening. It wasn't a childhood where she was gradually learning who she was. Looking back, I see a child trying to survive a life – a life she couldn't understand, and one she couldn't explain.
It's taken 16 years of writing to reach this understanding.
Helicopter parenting only scratches the surface of what a child goes through. It wasn't simply that my parents were overprotective or overly involved. The deeper issue was that I grew up with something they knew about that I didn't.
My physical needs were attended to, but my emotional and psychological needs as a child living with what I would later come to understand was a disability were never recognised or addressed.
What I had was never spoken about.
That distinction matters.
It is possible to care for someone while still leaving them unequipped to understand themselves. I wasn't given the language, the context, or the opportunity to make sense of who I was. Instead of helping me to understand why I experienced the world differently, my differences became behaviours to manage.
Throughout my childhood, I was made to follow my twin's lead. In many ways, she became my reference point for how I was supposed to move through the world, though that wasn't fair on either of us. As we grew older and I continued to struggle, the comparisons became increasingly apparent. Rather than recognising that we had different needs, I was expected to navigate life by the same rules that seemed to work for her, even though those same rules could never apply to me.
I was continually being judged for getting lost without ever having been given the map.
I was the angry child – but angry for a reason. Anger rarely appears without one.
Children don't have the words to explain why they feel overwhelmed, or fundamentally different from everyone around them. Without an understanding of my disability, I couldn't explain any of those things – not to other people, and certainly not to myself. My anger became part of my identity long before anyone asked what might be causing it.
School deepened that confusion.
When you don't know you have a disability, every struggle feels like a personal failing rather than something that deserves understanding. I don't believe my experience is unique. I believe anyone who grows up without understanding their disability will eventually find themselves revisiting their childhood, searching for answers that should have been given to them as a child. No child should have to grow up without understanding what they deal with – in my case a disability that affected me physically, mentally and emotionally.
Over the years I experienced setback after setback, yet those setbacks were rarely met with understanding. Instead, they gradually became evidence that I was seen as incapable.
Over time, that changes how you interpret yourself.
Instead of building an identity based on self-knowledge, I built one around misunderstandings. Instead of being able to learn about my strengths alongside my limitations, I learned to stay quiet. Instead of developing confidence through understanding, I spent years believing I wasn't capable.
I wasn't deprived of care in the obvious sense. My parents looked after me physically. They made sure my practical needs were met. But emotional understanding is a different kind of care. Helping a disabled child understand themselves is not an optional extra; it's part of raising them. Without it, you can grow up living inside an experience you have no framework for interpreting.
I believe that's why I find it so difficult to come to terms with my life. I'm trying to construct a story I was never given while I was living it. I'm looking back at decades of memories with information I didn't have trying to understand why I felt the way I did, why I struggled, and why I was labelled rather than understood.
There is something profoundly painful in realising that I could have understood myself much earlier if someone had simply explained what was happening to me. Not because it would have removed my difficulties, but because it would have allowed those around me to separate my disability from my identity. I might still have struggled, but I may not have spent so many years believing those struggles were evidence that I was to blame, or flawed.
Through my spiritual experiences, I now understand that my mother is deeply remorseful. My father, too, is aware, although I am less certain how far along in his journey he is. It does not lessen the impact of what happened or the decades shaped by it, because for many years I carried all of this alone. Now, I no longer have to.
I know I will never fully come to terms with the childhood I experienced, in the way I experienced it. Too many decades were spent without the knowledge or the support that could have helped me to make sense of what I went through.
It's been a life shaped by difficulties. Looking back, I realise how much of it was spent trying to make sense of experiences I was never given the understanding to interpret. As a small child, I knew I was angry, but I also knew I wasn't a bad child. Yes, it was my story because I've had to live it, but it was never my story to carry. In time, it became a story that was necessary to piece together, to be told.
What I'm trying to do now: is not to rewrite my childhood, but to finally understand it. In many ways, I think I've finally written the explanation that the child I was, was never given.
Ilana Estelle is an author and writer, and the founder of The CP Diary. Born with something she didn’t know she had, later learning it was cerebral palsy, and then ten years after – also being diagnosed with autism, she has turned personal adversity into a powerful platform for awareness, reflection, and change. Through her writing, Ilana inspires readers to explore resilience, mindfulness, and what it means to live authentically, no matter the challenges.
Looking for inspiration and honest reflection? Visit The CP Diary for daily insights. To explore Ilana’s books and resources, head to her author page and discover how her journey can support your own.
To check out her site please follow the link: https://www.thecpdiary.com
